Since I was a teenager and my whole adult life I've had excellent hygiene with my teeth and everything. I have ocd too.So anyways I don't floss every night but 4 times a week. I been using spin brushes since they came out.I use mouthwash daily. I brush my teeth twice a day and thoroughly.Despite being so clean my molars and wisdom teeth have all rotted FROM THE INSIDE?!?! Dentist all think I have bad teeth hygiene and have said as much. I have no top molars and 2 left on the bottom. My left side lower tooth hurts and needs pulled I can tell it's hollow out.Dors this happen to anyone else. My sister in law has lupus and has the same problem.

18 Replies

I have no confirmed diagnosis of lupus but my previous dentist thought I had by what was going on in my mouth. I'd suddenly get toothache and the nerve had gone within the tooth plus my teeth literally loosen and fall out the gums. In July I lost two teeth. I've always had a good dental routine and the dentist says it is NOT my fault it's the illness causing it. Since that dentists retirement my new dentist has carried on the same routine whereby I visit every three months to make sure all is well. I truly cannot thank my dentists enough. Forgot to say I have lichen planus in my mouth which I've had for twenty years. Hope it helps a little but I cannot truly say it's due to lupus. 'M'

Will the messed up part was I have not even seen my dentist since I found out I had lupus which has been a whole year I always was embarrassed of going because of that and the fact that I brush my teeth two times a day my mom went with me and said she always brushes her teeth religiously and the dentist just seem like he didn't believe us and yes it pissed me off especially when someone tell you that your hygiene is not good that's messed up I'm not a little kid I was I mean I was a teenager and in my twenties when they were saying that I brush my teeth everyday so yes it pissed me off I know it's off topic but yeah I know you're saying

Hello I'm like Mabsie. I had good Teeth. I remember begin 16 and a lady ask me if I had falso teeth because the were so pretty. Every check up good, no cavities, nothing. Then all of a sudden I started having issues with my teeth. I would go for a check up and teeth would be fine, went to my next one and some teeth would be loose or with cavities, when back to have that work done maybe a week later and teeth that was strong and ok last visit was now loose and if I would wiggle it for a few seconds would fall out. My Dentist was going crazy not knowing what was going on, had him calling his colleagues in New York.

This was before I found out I had Lupus and by the time I did I had lost a majority of my teeth within a 2 yrs period and I was in my mid 30's. I later learned that it was caused by the L word. My teeth was loosening from the bones and the fact that that they put me on pred didn't help. So you may want to educate your Dentist on this, trust me I brushed, etc every day 2xs also. I wish you luck

I have issues with my gums and like yourself I've always taken care of my teeth. I've noticed my teeth don't look as white and my guns bleed every time I brush. My dentist said I don't have gum disease and I've read bleeding gums can be a symptom of lupus. My back teeth seem sensitive but my dentist says they are fine?? It's very odd! I've switched to use corsodyl which stops the bleeding but I've found if I eat tough food my gums bleed which can be embarrassing to say the least.

Sorry to hear about your teeth it must be very distressing - I have lupus and Sjogrens and recently started having problems with my teeth cracking and had to had a few crowns fitted and one removed my dentist said it is the Sjogrens that can affect teeth - maybe lupus is the same they are all strange illnesses that seem to go around the body attacking individual bits

I also have tooth problems, even though when I was younger I never had a single cavity, ever. I admit I've stopped even going to the dentist (bad I know) because when I did they only seemed to make problems worse, especially when the last one insisted on scaling the plaque off my teeth, which seemed to make the bacteria in my mouth go into overdrive. I got the same lecture about bad hygiene. I could brush all day, use mouthwash regularly, and my teeth would still be stained and wobbly in the gums. I started oil pulling (where you swish oil round in your mouth and spit it out, do a google search for it), salt rinsing, and brushing very gently with a vibrating brush, using charcoal to help with some of the staining (though it's permanent I think - the meds I used to take stained my teeth and they never recovered), and at least now they aren't as wobbly. I don't floss at all due to the bleeding of my gums - flossing just seems to traumatise my gums even more, and oil pulling does the same job, a lot more gently. I'm still rather leery of going to any dentist however - NHS dentists are difficult to find, and many of them charge for even the basics now, so not sure there would be a point. I suspect I will have to in the near future however, as I have a place where a molar was removed in the back which is wearing down to the bone, and I suspect that isn't helping matters much.

It's difficult to find a dentist who won't give you the textbook song and dance. It would be great if more were educated about chronic illness, but it can really be a difficult hunt to find one who is willing to go off-script. I hope you manage to get your teeth sorted out.

The Sulfasalazine did (it even stained my tears yellow due to the preservatives) and as a result my teeth are stained now. The mouthwash I was given by the dentist (cordosyl I think it was?) also has a tendency to stain teeth. Now both of these were supposed to eventually fade once you stopped using it, but maybe due to my teeth being more porous due to illness, I don't know...they're yellowed and somewhat brownish now and nothing will clean them. I don't drink coffee or tea and haven't for a long time, I haven't smoked for years. But, meh, teeth never get anything but a faded yellow now matter what. It's gnarly - I just don't smile much.

Change your dentist! Ignorant. My dentist, on hearing I had Sjogrens and then Lupus, immediately gave me a printed sheet with instructions on how to care for my teeth. I use Colgate Duraphat toothpaste (full of Fluoride). Expensive but £8 a month is worth it to keep your teeth. I use a Fluoride mouth wash several times a day. I chew Extra (NOT the whitener one) constantly and this keeps saliva in your mouth which keeps the decay at bay. I use Xylimets (from mouthulcershop on line though they are trying to get them on NHS prescription list) at night and sometimes when driving far. These discs adhere to the gum and slowly melt keeping your mouth moist which is the key to keeping your teeth. Hope this helps - it ISNT YOU ! Lupus etc doesn't have a high profile. My Doc said she did a course in Med School and nothing since! Best wishes Cas70

After reading the opening post and all the replies, I am simply amazed at how Lupus affects us!

I have lost 3 teeth in a span of 5 years. Like a few others here, I have dental hygienist and dentists rave about how gorgeous and perfect my teeth were. I lost my first tooth at 25, second at 34, third at 37, then 38 and just over a month ago my last at 39.

I remember my mom (who also has lupus) losing her teeth in her 30's, 40's and 50's. Both of us had picture perfect teeth.

Dentist's here really don't know much about lupus. I've talked to a few, they just nod their heads like I told just told my eyes are blue, completely disregards or does not comprehend what I say.

I know right a lot of the s*** you just think that it's just you yourself until somebody else brings it up because talking about stuff like that is embarrassing I mean it is for me being somebody that has like OCD and brush my teeth so I'm not sure I like to look normal like it's tragic to start losing your teeth and to worry about losing the front ones too because of this disease it's horrible I have all the special tooth care stuff like for sensitive teeth because my teeth are so sensitive that they hurt I can't even use teeth whitener right now but that's besides the point I'm just worried about keeping them

Like my teeth as far as appearances go all of my front teeth whenever I don't have a cavity or anything which actually did happen even though I brush my teeth so much that I would have it fixed right away and I do drink coffee constantly all day so I do have to whiten my teeth like every six months or so but like all of my bad teeth I only had two two molars that's it they all read it from the outside and the inside out and my fiance like I showed it to him like this to swallow watch they're going to pull it and they did and that was a couple years ago and now I have another one that hurts real bad now they know that I have Lupus though maybe they can help me figure it out it also does hurt the lake looks of my front teeth usually they look very like thick solid and white and now they almost look like queers like they lost their calcium or something something weird and they will stay in any color of what I'm drinking

I hear you! I too have OCD. I am constantly afraid that when I smile, people can see the teeth missing on my left side (all 5 were taken on the side only....weird eh?). I can't chew on the left at all, only on the right because my top back 3 are missing and bottom 2 on the bottom. I know no one can tell, but I still feel as though they can see. It makese feel less of a person. Just as I do when one of my bald spots are merely visible.

I definitely have to agree that it is great reading, posting and feeling that we are not alone with our odd symptoms and pains. Many many times I say to my partner, I swear I am not a hypochondriac; I am fortunate to have him and my kids who understand what I am going through, because most people lack the understanding and think I am a whiner and I make up these aches, pains, electrical shocks...until I take my hair down and show them my angry bald spots....then they say whoa! Ok, I see.

This forum is a wonderful gathering place of likeness, education and support

I don't think my lupus has affected my teeth much. I have some yellowing from taking the drug trileptal which it claims it will do. Also from drinking tea which I won't give up. I can also blame sulfasalazine after reading about it here. I whiten them from time to time with material I get from the dentist. Because I have ground my teeth so much I have removed the enamel quite a bit and it's easy for tea or something else to get into my teeth and stain them.

I have several crowns from problems in my 50's but so do a lot of people who don't have autoimmune diseases, including my dentist, so I don't think I can blame my autoimmune diseases for them. It's good to know that if I hit a bad period with my teeth that I may suspect my lupus has become much more active and could be the culprit.

My teeth go in the roots and have to come out. 2 more to come out soon, although they are crowns and my body just doesn't seem to like crowns - the pins may be or just having something up in the root for it to attack - who knows.

Like many of you, I have found it so frustrating how little dentists know about our problems, but I have to remind my dentist every time I go especially about what I can take and not take.

Saying that, this dentist, the last- before she retired and the one before that are/were very good.

They see so many patients, they forget and thank me for telling them which anaesthetic to give me - not scandonest (I went unconscious with that in 2004 and that dentist said never have it again - had egg in it, apparently and I am allergic to egg); that I must have no topical and only water to rinse as I have such severe chemical allergies.

Life is surely very difficult what with hair-loss, too, but I now think that if people don't like me because of all this, then they really aren't worth knowing.

We have to be so strong of spirit and it can really drag us down, but we have no choice but to keep going and keep positive.

Julietsmombless2015...I'm so sorry...Been there with the immaculate teeth brushing due to Tetracycline I was given as a baby in '61...unfortunately it stained my adult teeth but I always brushed them like crazy when I was younger!

I don't have Lupus BUT I have had chronic migraines/headaches for about 35 years and been on daily pain medication for them for 17 years. I don't know if you are but those types of meds (and and others that are drying to your mouth as well) can cause the "good bacteria" to dry up or be gone from your teeth. That happened to me...18 years ago I had 2 fillings in my whole month.period...and a few years after being on long acting opiates I ended up having to lose ALL of my teeth due to decay and had to have them all pulled and get dentures. And I was about 45 years old. Could that be your problem? Good luck to you I know that having nice teeth is important 😆